LIVE Chat with Geri Dawson, PhD & Lisa Goring Analyzing DSM-5

Chief Science Officer Geri Dawson, PhD and Family Services Vice President Lisa Goring hosted a LIVE Chat to address concerns sparked by this week’s New York Times article on proposed revisions to the medical definition of autism spectrum disorder in the DSM-5, to be published in 2013. Readers heard about its potential implications for individuals to receive an autism diagnosis and appropriate services.

2:56

Hello everyone! This is Dr. Dawson. Thanks for joining us today to discuss the new DSM changes. We’ll be starting momentarily.

2:57

Hi All! Thanks so much for taking the time to be with us today. We look forward to the chat!

3:00

Comment From jennifer

Does the new DSM effect children already diagnosed…I have two with PDD-NOS….will their services change?

3:02

Hi Jennifer, This is Dr. Dawson. The new system has yet to be implemented. But once it is implemented, if your children were assessed again using the new system and, if they didn’t qualify for an ASD, theoretically yes, if could affect their eligibility for services. Autism Speaks will be monitoring this carefully. We want to make sure that no one is denied the services they need.

3:03

Comment From JenB

I read the new definition on the NY Times site. Is this the final definition or could it change? Would children who when first diagnosed met the criteria but who have been helped by intensive therapies and may not still meet them to the same degree (but still need therapy to continue to gain ground) be kicked out?

3:05

Hi Jen, This is Dr. Dawson. The APA committee that is developing the new criteria is in the process of finaling the criteria. They expect to be done in December. Then, they will conduct field trials to see how the criteria work in the real world. You ask a good question: What if a child no longer qualifies for a diagnosis because they received treatment? This will have to be decided byindividual school systems and other policy makers. We will be working hard to advocate to make sure that those children who are improving but still need services are able to retain them.

3:06

Comment From Robin

will children who are already classified be “grandfathered” per se or will we lose our classification and our services

3:07

Hi Robin, it’s Lisa – Services should be based upon the child’s needs. We will be monitoring it to make sure that individuals get the services they need.

3:09

Comment From Tavia

What does DSM stand for? Thank you.

3:09

Hi Tavia, This is Dr. Dawson. The DSM standards for the Diagnostic and Statistical Manual of Mental Disorders by the American Psychtriac Association. It is the manual that doctors use to diagnosis conditions such as autism.

3:10

Comment From Jeanie

What about children who currently have a diagnosis of PDD-NOS or Asperger’s? Will they have to be reassessed once the DSM-V rolls out, or can their current diagnoses stand?

3:11

Hi Jeanie, this is Lisa. Although it is possible that some service providers or funders could request a re-evaluation, especially if your child is seeking new services, it is our hope and understanding that the current diagnosis will stand for existing services. Presently, most social service programs require an assessment to determine eligibility.

3:12

Comment From Rebecca Pavlik

I am very scared about this new diagnostic criteria. My son is PDD-NOS I have read as many as 85% of those children will be ruled out with the new criteria. My son has a 2 year developmental delay. He is ten reads at a 1st grade level, cannot write legibly, already receives basically no services outside of SSI and Medicaid. What will happen to all of these kids?

3:12

Hi Rebecca, This is Dr. Dawson. The study discussed in the New York Times article is very preliminary and probably overestimated the number of children who would be denied a diagnosis with the new system. So, hang in there. Given that your child has a two year developmental delay, he should qualify for services regardless. In any case, we are going to monitor this carefully to make sure that kids don’t get denied services under the new system.

3:15

Comment From melissa

what can we as parents do??

3:15

Hi Melissa it’s Lisa – As parents we need to stay updated and understand the guidelines and we need to continue to advocate for the services that our children need.

3:16

Comment From Bonnie

Will it be posted somewhere so we can read all the changes that are being made?

3:17

Hi Bonnie, that’s a great question. the American Psychiatric Association (APA) has a website that details all the information and background about the proposed changes to DSM-5. Here is a link: http://www.dsm5.org/Pages/Default.aspx. Thanks, Lisa

3:18

Comment From Guest

What is most disturbing to me is that the powers that be seem to see this as a way to solve the autism epidemic. Is there a governing board higher than the APA that keeps this in check?

3:19

Dear guest (at 3:12), This is Dr. Dawson. The proposed changes in the DSM will not “solve the autism epidemic.” In fact, research has shown that the broadening of the diagnostic criteria only account for a portion of the increase in autism prevalence. Approximately 50% of the increase remains unexplained. Autism Speaks is committed to understanding why there has been a dramatic increase, focusing on possible environmental risk factors that could be contributing. We are currently funding a study to get more accurate estimates of the prevalence of autism in the US and around the world and many studies focused on environmental risk factors. It’s up to all of us to work together make sure that the changes in the DSM don’t end up discriminating against people who need services.

3:21

Comment From Mara

How will this change affect our kids as they grow, will they still be protected under American’s with Disability Act?

3:21

Hi Mara, your question about protection under the American Disabilities Act (ADA) is a great one. Fortunately, autism will continue to be protected under the ADA. The proposed changes have nothing to do with changing the disability status of autism.

3:22

Comment From Guest

I have 2 male Grand sons non verbal autistic ages 8 and 5 already getting help. Do you think they will stay on the program?

3:22

Hi Guest it’s Lisa – the services that your grandsons are receiving should continue to be based upon their needs. It will be necessary to monitor their progress to make sure that their needs are being met.

3:24

Comment From Will

Why is Autism Speaks adopting a “wait-and-see” approach with regard to the outcome of this redefinition of what falls on the spectrum, and what steps are you prepared to take to insure that this change does not marginalize those currently considered to be high-fuctioning/Aspergers/PDD-NOS?

3:25

Hi Will. This is Dr. Dawson. We really don’t know yet how the new system will influence the ability to receive a diagnosis or services. The study discussed in the New York Times today is on a very small sample with old data and only included higher functioning persons. So, they are likely greatly overestimating the impact of the new system. We are designing and funding a study that will examine the impact of the new diagnostic system on diagnosis and access to services. We are also working with policy makers and insurance companies to make sure that people are not discriminated against when the new system is implemented.

3:28

Comment From Chone

I’m trying to ask a question in the chat but it isnt posting…. So here goes…. When can we expect our children to retested? And once retested will a new IEP need to done? Should we contact our schools and teachers now to find out? Personally I would really hate to wait until the middle of the next year

3:29

Hi Chone it’s Lisa – most likely you will still follow the current IEP, until your child’s annual review. Your child’s IEP should be developed based upon his or her strengths and challenges. As a parent you can always request an IEP meeting to review the goals and services.

3:29

Comment From Maria Lopez-Torres

in an article I read in the New york times it said that they are using a 1993 study for the changing the new criteria in the DSM, do you know if that is the only study they are going by or are they using any new study’s?

3:30

Dear Maria, the 1993 study referred to in the New York Times today came from a presentation that Dr. Fred Volkmar at Yale gave to the Icelandic Medical Association this week. However, that study has not gone through the peer-review process that research studies typically receive before publication. There is another study that was published in the June 2011 edition of the Journal of the American Academy of Child & Adolescent Psychiatry (JAACAP) by Mattila et al that reached a similar conclusion although the figures were very different. That same journal has a wonderful editorial by one of the members of the DSM-5 Neurodevelopmenatl Disorders Workgroup, Dr. Francesca Happe. Thank you for your question.

3:31

Comment From Vanessa in NC

What is behind the push to change the way ASDs are classified? I just don’t understand the rationale. Why lump everyone together? Our son’s needs, as someone with Asperger’s, are largely different than some of his peers at school who have a “classic” autism diagnosis and have more acute cognitive deficits.

3:33

Hi Vanessa, This is Dr. Dawson. The scientific rationale behind the changes actually are quite solid. The different distinctions among the subtypes (Autism, PDD-NOS, Asperger Syndrome, and so on) don’t map onto different causes or different treatment approaches. For example, a very similar treatment approach would likely be used for your son, who has Asperger syndrome, as would be used for a child with high functioning autism. The only distinction between Asperger syndrome and High Functioning Autism in the current system has to do with how much speech the child had by 3 years of age. It has been difficult for even expert clinicians to make reliable distinctions among the subtypes because these distinctions rely on people’s recollection of very early history. So, it does make sense to use a broad category – ASD. In addition, for each person, the doctor will need to describe the severity of symptoms, presence and degree of intellectual and language disability, and other factors, such as presence of medical conditions (e.g. GI distress) and genetic etiology (e.g. fragile X). While the new changes make sense scientifically, we need to keep in mind that this is not simply an academic exercise. We need to make sure that these changes don’t lead to people being denied the services they deserve.

3:34

Comment From Jason

Hello. My question is whether there are plans to look into the proposed changes to the diagnostic criteria with a more representative sample of children with ASD/Aspergers/PDD-NOS before the changes actually take place?

3:34

Hello Jason, your question about whether there will be any testing or validation of the proposed changes before they are implemented is a great one. The answer is yes, there will be a number of “field testing” studies conducted between now and the final publication date, which is expected to occur in May 2013. Thanks for participating in our chat today. Lisa

3:36

Comment From Guest

This change will effect only new diagnosis right? I mean you can’t take away a diagnosis? Can you?

3:36

Hello Guest (at 3:26). This is Dr. Dawson. The concern here is if a child (or adult) needs to be re-evaluated, they would be evaluated under the new system. We will be working hard to make sure that this won’t result in denial of services if the child no longer meets criteria for an ASD. This may need to be an advocacy effort state-by-state and we are commited to doing that, if necessary.

3:42

Comment From Tricia

It seems this is going to make it very difficult for families. My son has many of the service and he has come so far with them, but only with them. He has disabilities across the board, at least some in every area. Seems like kids like him who are improving are going to be left out in the cold if families are middle or low income.

3:42

Hi Tricia, This is Dr. Dawson. We don’t know yet what impact the new system will have. The study that was discussed in the New York Times article today likely overestimated the impact. If the new system does end up excluding some people from a diagnosis of ASD, it will likely be those with higher cognitive cabilities. If your child has disabiltiies across the board, he should qualify for services, even under the new system. That said, I agree that we don’t want to make obtaining services any more difficult for families. Families are struggling to get services as it is. Autism Speaks is commited to ensuring that the new diagnostic system doesn’t discriminate against people, especially those with low incomes or those with higher cognitive abilities.

3:43

Comment From Sue

I’d like to see some discussion about how these changes may impact adults with ASD. Please discuss how many adults with AS or HFA need significant supports to transition to independence and to maintain independence. Also,they may have high comorbidity of mood and anxiety disorders. These changes may take us backwards in our understanding of complexities of ASDs and quality of life in adulthood.

3:43

Sue, we share your concerns about how the changes may impact adults with ASD, especially those who fit into the more abled end of the spectrum. Your question about how many of these adults require supports for transition to independence is a good one. Unfortunately, this type of epidemiological research has not been conducted to date so we don’t have a good idea of what % of individuals meet this criteria. Quality of life during adulthood is a significant concern for us and one of the reasons we helped to develop Advancing Future for Adults with Autism, a consortium of organizations working to redefine the future for adults. Please link here for more info on AFAA. (www.afaa-us.org)

3:44

Comment From Peter Faustino

Hi Lisa and Geri – Thank you for doing this live chat. It’s clear that there is so much misinformation that it scares many people into worrying if programs and services will change. I wish the APA were doing more to educate the public about these changes. While I agree with everything you have said, do you think that pediatricians (often the first line of defense) will be hesitant to diagnosis autism and therefore slow early intervention? Right now the dx of PDD-NOS is used for young children showing signs of autism. With Early Intervention they are making tremendous progress. What can be done to share these unintended effects with APA?

3:44

Hi Peter it’s Lisa – this is a great question. We know how beneficial early intervention can be and we must continue to build awareness around the signs of autism so that children who qualify can get services as soon as possible. We must also continue to educate pediatricians as well as families about the signs of autism and the importance of early diagnosis. Thanks for joining us!

3:48

Hello Guest at 3:37, insurance coverage is an important issue to Autism Speaks and we don’t expect the DSM 5 changes to have a significant impact. All of the 29 state laws that require health plans to cover autism treatments have language in the definitions that apply to latest definition of autism spectrum disorders. So these laws will not be impacted by these changes. However, if a person does not meet the criteria for ASD under the new DSM, a doctor may choose or have to use another diagnostic code. Thanks for this question. Lisa G

3:48

oops. Here comes the question…

3:48

Comment From Guest

For some reason, these are not posting ot chat, so I will try one more time. Any ideas regarding the affect of these changes on insurance coverage for OT, PT, ST? I know that there have been great gains recently, with new laws put into use. I am a bit nervous that the new changes might affect our recent progress.

How will this affect kids in the public schools seeking IEP services? I know in some cases, services are denied if they do not fit in the child’s specific diagnoses.

3:53

Michelle, your question about IEP services in public schools is a great one. Generally speaking, a diagnosis of autism is sufficient to permit a student to receive special educations services with an IEP under IDEA and we do not expect that to change under the new DSM-5 criteria. However, for those who no longer meet the new criteria it may become more challenging to qualify for an IEP. Of course, environmental accommodations are available through 504(b) if the student needs it. But make no mistake, we are very concerned that some students with autism may find it more difficult to get the support they need. Autism Speaks plans to closely monitor this situation and advocate where needed.

3:54

Comment From lisa

what is g.i. distress?

3:55

Hi LIsa, This is Dr. Dawson. Many persons with autism have associated medical conditions, such as sleep problems, gastrointestinal problems (GI distress), and seizures. Under the new system, the doctor will be asked to note whether or not the person has these conditions because they can greatly interfere with a person’s ability to take advantage of behavioral and educational treatments.

3:57

Comment From Dianna

One of my granddaughters is now a highly functioning autistic but that’s only because of my daughter and son-in-laws’ efforts and home-schooling. She will never be able to support herself or live alone despite all her advancements. I see a similar question was proposed earlier but if she is denied her medication she will definitely regress. It seems like it’s just another burden to put on our autistic population. She’s better, so she may not qualify when she’s reevaluated, so no meds, so she regresses, then reevaluated, back on meds, gets better, then fails revaluation, etc. Is this something you, Autism Speaks, will be trying to prevent? This cycle of passing evaluation / failing evaluation?

3:57

Hi Dianna, it sounds as if your daughter and son-in-law have done a great job advocating for your granddaughter. We will need to carefully monitor the effects of any possible changes in service. It will be important to keep data as to any changes in skills as a result of a change in service. We are working hard at Autism Speaks to provide tools and resources to improve the lives of all that are living with autism, including a grandparent’s support kit as well as a transition tool kit. Please visit the Autism Speaks website www.autismspeaks.org Thanks, Lisa

3:58

Comment From Jeff

Previous reports had mentioned that Asperger’s syndrome might be eliminated as a diagnosis entirely in the DSM V. Is this change part of what we’re discussing today?

3:59

Hi Jeff, This is Dr. Dawson. In the new diagnostic system, the subcategories of autism, PDD-NOS, Asperger syndrome, and so on, would be eliminated and all of these subtypes would fall under one umbrella term – Autism Spectrum Disorder. However, people may still want to refer to themselves as having Asperger syndrome, even though the diagnosis won’t be recognized formally by the medical community.

4:00

Comment From Beth

I would like to advocate in my state. How would I go about it? I am finishing my bachelors in Human Services and there is a great need for support here where I live

4:01

Dear Beth, we would love to have your help advocating in your state! Please visit www.autismvotes.org or contact our Government Relations department atadvocacy@autismspeaks.org. Thank you for your offer. We’ll let our AutismVotes people know! Lisa

4:03

Comment From JD

I am an adult with Asperger’s. Although I am high-functioning and have a masters degree, I am unable to maintain work. I have had over 30 jobs, so I live on SSDI. It is unlikely that I would be diagnosed with the Autism Spectrum Disorder in DSM-V. So would I lose my Social Security Disability Insurance?

4:04

Hi JD, This is Dr. Dawson. I am sorry to hear that it’s been so hard for you to maintain work. It is unclear whether the changes in the DSM would mean that you would no longer receive a diagnosis of ASD. However, it is clear that your disability is interfering with your ability to function and you could benefit from receiving support and services, such as job coaching. We want to make sure that people like you, who are struggling with symptoms of autism, still receive the support and services you need under the new system. We will work hard on your behalf. Please join us in our advocacy efforts.

4:06

Comment From Kathy

We’re a military family and I worry about how this might affect our son every time we move. Schools want to do their own testing and have documentation. How will this affect him and hopefuly protect him from being stripped of services?

4:07

Hi Kathy, as a military family please be sure to visit our support page for Military Families and Autism Advocacy athttp://www.autismvotes.org/site/c.frKNI3PCImE/b.5141983/k.A9E4/Military_homepage.htm. As you obviously know, military families move frequently and need to change schools. That said, your son’s diagnosis shouldn’t change just because you move. In fact, that might violate federal education law so you should talk with a special education advocate or lawyer to make sure. Please visit our Family Services Resource Guide if you need a referral in your local area. Also, we have a Congressional Briefing on the military and autism on Jan 31st in Washington DC. Please visit www.autismvotes.org for more information.

4:08

Dear Everyone, I am so sorry we are unable to answer all of your questions. Please keep in touch through our Facebook page and follow the Autism Speaks Official Blog site. We will be monitoring and writing about the DSM as this unfolds. Thanks again for joining us. Dr. Dawson

This is Angie.. I’m confused. Social services has me diagnosed as autism, but psychologist diagnosed me with aspergers in 2004… which do I have? Also, with the DSM making changes, will it determine whether previous diagnoses in past years assume retestings for autism and aspergers this year and what if they determined I don’t have either one but diagnosed with another disability? I’ve learned to accept both autism and aspergers…

Regarding the DSM change, I had red flags go up last year when the proposals were released. As Mom to a young adult with Aspergers, we have never received services. While in K-12 he had an IEP, they did not know how to support him. He may lose his diagnosis and since we don’t get services from the state of WA, we had at least hoped in the future there may have been supports for him. Although he can do many things, he still needs some supports to accomplish daily living. It is disturbing when all I hear is we will monitor the situation.

hey!!!! my brother actually has austim. he also has HDHD. He is so sweet. but its hard being the older sister of three sibling specially with a brother with austim. but he is well talented.he practicing how to read and he is now speaking full sentences!!!!!

What changes will be made in the clinical definition of Autism? If an individual now fails to meet the requirements for services (Autism), what allowances will be made to make sure there is not a break in their services?

Hi my name is Cherie I have a 4 year old high functioning autistic son that has a very large vocabulary but cant really engage in a conversation with others yet. And his social development skills with other children his age is very limited. He is attending Speech Therapy paid for by my insurance 3 times a week he also receives services through our school district. I am very worried this new definition could effect him and the services he receives he has made huge gains already by working with the therapists. How could this new definition effect him?

Hi, Mary here. I am an adult with an Autism diagnosis (and a law degree). I can only communicate effectively like Carly via a computer.

I am aware in Florida, by former Governor Executive Order, Autism Spectrum conditions have been defined as a matter of law as a neurological condition. I am also aware that Title III Americans With Disabilities Act entities including the APA and its DSM V are required to meet the ADA requirements for Title II in order for any agency or court to use the DSM V. I am further aware the DSM V has failed to comply with the Title II Americans With Disabilities Act 28 C.F.R. Sec. 35.105(a), (c) self evaluation assessments ‘with input of disabled individuals and disability organizations.’ This would require those most impacted such as people with Asperger’s diagnoses to provide their input and if there are too many objections, could invalidate the “revisions.” I have read the APA is refusing to take comments, thus is a violation of the ADA’s anti-discrimination mandates at this point.

Autism Spectrum diagnoses have been proven to be gender discriminatory adverse to women with Autism Spectrum conditions, and Autism Spectrum conditions vary according to racial and ethnic persons. This has the potential to result in Civil Rights Act of 1964 gender or racial civil rights challenges to the new DSM V “revisions.”

I have gathered extensive evidence the studies upon which DSM V are based do not address the difference in assessment for Autistic communication in real person vs. Online, such that a person with an Autism diagnosis like myself may be non-verbal and severely Autistic in real person, yet achieve a law degree via using Online assistive technologies.

The ADA also defines disability to include “record of” disabilities, and once a court has rendered a res judicata final Autism decision, it must be given full faith and credit under the U.S. Constitution, and is not subject to “revision” or collateral review such as DSM V lacking due process or new facts that did not exist before. I can see Autism families electing to rely on the “record of” prong of the ADA’s disability definition to circumvent demands to be “re-evaluated,” if not simply outright sue for the DSM V “revisions” constituting unkawful disability discrimination in violation of the ADA.

Also, many families have interstate businesses and/or vested contract rights based on their Autism Spectrum diagnosis (e.g. The Horse Boy, Autism service dog providers, Autism equine therapy businesses), and impairment of contracts and other clauses of the U.S. Constitution would be violated in such circumstances by a DSM V “revision” of diagnosis.

Moreover, the entire DSM V evidence-based foundation appears to be totally and completely lacking, with the result of the DSM V Autism and related “revisions” amounting to being arbitrary, capricious, and irrational discrimination in violation of the ADA for the reason adults with Autism have not been located and provided access to diagnosis, so there are no count numbers for a valid comparison for ‘nipping it in the bud’ as Fred Volker stated (an admissible declaration against interest admission that can be introduced in a Court to prove the DSM V “revisions” are ideologically, politically based and lack evidence-based support.

The DSM V itself does not include as part of the diagnosing criteria that the doctor making the diagnosis comply with the Americans With Disabilities Act’s “effective communication” federal mandates to enable the Autistic person or family with Asperger’s diagnosed up the family tree to effectively communicate all necessary facts and patient history material and relevant to making a “revised” Autism diagnosis, leaving the “revised” diagnoses open to being based on highly inaccurate or even no patient history taking, which is also in Florida a discipinary licensure violation for a medical doctor.

What I see is a complete train wreck that ultimately could result in APA and the DSM V committee being sued for money damages in official and individual capacities, possibly even by a class action, and potential a Court rendering injunctive relief to Bar use of the DSM V for any Autism Spectrum “revised” diagnoses, with a mandatory injunction to require neurologists make such diagnoses. I am wondering to what extent you have analysed these issues or what information you have to demonstrate APA DSM V committee or APA has.

Potentially millions of people who actually have Autism validated by findings of hundreds of objective genetic and/or neurological research studies are at threat of injury and harm of receiving wrong treatments that will essentially result in our being medical experimentation guinea pigs (pervasive institutionalized medical malpractice) from the DSM V “revisions” as they stand. And this is by far a major issue considering states that went after medical licenses of chelation doctors and the Geiers for the same thing !

It isn’t even clear from a fundamental medical and plain dictionary definitional viewpoint how the different gut microbiome in Autism is a “mental disorder,” giving APA jurisdiction to make these “revisions” to define Autism.

One more thing I forgot to mention: Also, how are the DSM V “revisions” to the Autism and related definitions not an impermissible dilution of the right to vote of this extremely large protected minority class ? Thanks.

Our daughter with autism is now 21. Going from a diagnosis of PDD NOS to autism many doctors and big hospitals along the way has been hell. At first the DDS literally flipped a coin. I could write a book.

My daughter had a psychology test done and it shows her IQ is 79. She hardly talks at all and the test said that she is functioning at a 2 yr old level and she is going on 4 years old. Is it autism? shows it is borderline intellectual functioning..